Tuesday, 1 May 2012

‘Breaking the mould’

Hi Everyone,

I’m one of the stories for CF Week and I’m celebrating today, 1 May, as it’s my gorgeous son Felix’s 5th birthday.

Every parent takes delight in the milestones of their off-spring, but there’s extra poignancy for me. Born in 1971 and not expected to live much beyond my teens, I’ve never been complacent about life, taken anything for granted which was exacerbated by the sad death of CF friends. In my 20s I never thought I’d live long enough to have my own wife and child.

Marriage to Katie in 2003 spurred me on that my destiny might be different than I had originally thought. I did have serious concerns about starting a family when there’s no certainty of being alive for them, but I was feeling healthy enough, so it seemed a natural a way to keep defying my illness. When so much of a CF life is not at all normal, it’s fulfilling to do something that your peers see as routine and breaks the CF boundaries.

Three difficult years later on our sixth IVF cycle we got lucky and in 2007 we had our miracle boy. Felix means ‘happy’ in Greek and ‘lucky’ in Latin, so he will be ‘happy-go-lucky’.

Being a parent while managing my daily CF regime of 40 tablets, nebulisers and physiotherapy is punishing and at times counter-intuitive, involving situations that puts my own health second. From the extra tiredness to increased risk of infection to being exposed to the elements when taking Felix out. Indeed, I’m very s of the risks around being too close to him when he has a sniffle and as harsh as it sounds, I shield myself by not kissing him at these times.

I don’t completely hide my illness from Felix, who has always seen me doing my nebulisers and heard me coughing. He doesn’t really ask me about it and just takes it in his stride as children do.Generally, I do as much as I can and act like any normal dad running around with Felix, which I know he appreciates from me.

When I’m having a dark CF moment, Felix takes my mind off it and inspires me to keep fighting. He is a useful distraction, stopping me from dwelling too long on my personal health battle. Indeed, I only need to look into his eyes to see all my tomorrows.

We have both ‘broken the mould’ in our lives – me to stay in this world and live a longer, better life and Felix to enter it. He’s the best of me, my lasting legacy, the final piece of my jigsaw; and someone I fully intend to see grow up and have his own family.

Outside of working full-time this week, I intend to go for a jog (in between the showers) because exercise has been a vital part of my survival.

I’ll also write my ‘Postcards from Earth’ blog and a chapter of my book which has allowed me to open up about my 40 years of battling CF but gives me the chance to de-mystify the condition for the non-CF community where it needs to be better understood.